@ Collicat

Thank you so much for your advice and kind words when I was facing my first surgery. I am now struggling with whether to go for the j-pouch surgery, or stick with my ileo.

I know you said that Dillon is doing so well, and I am so happy for him. If anyone is going to do a j-pouch surgery, then Dr. M is the best. I have complete confidence in her.

I don't mind the ileo, and I like the control it gives me, but I am having issues with itchiness and sensitive skin and I am not sure I want to deal with that for another 40 years. On the other hand, I am a bit worried about the potential complications and also lifestyle of the j-pouch.

I am just worried about things like leakage, night wakings, frequent and/or urgent BM's etc. I know that I can't really be compared to Dillon, but did he have any problems like that? Do you mind me asking how often he goes now? Does he go at night? Does he have any urgency issues?

I am seeing Dr. M in a few weeks to further discuss my decision. I have a surgery date in September, and I just have to decide which surgery to have.

As you know everyone is different and Dr. M will be able to tell you numbers on the questions you are asking.

As for Dillon.....

His life is not perfect but on a scale of 0-10 with 10 being UC days I would think he would be about a 1 (due to the number of bathroom trips). His frequency varies from day to day and is completely dependant on what he eats and drinks. He is almost always up about every 4 hrs during the night.....so for an 8 hr sleep he would be up once. The odd day he has slept 8-10 hrs without getting up but those days are very rare. Now, I have heard from many people that there are ways to slow this down (ie not eating after dinner etc.). Dillon has no interest and conforming his eating habits to slow down his transit. He says it is really no big deal to get up. He is also 20 yrs old and right or wrong alcohol is part of his life. A lot of people say that alcohol speeds things up but he says everything slows way down when he drinks. He does need to be very careful about dehydrating.

During the day he goes somewhere between 4-8 times a day (very approx). However, there is no urgency. When he feels he has to go he can easily wait an hour or so. Just like before UC days....you knew when you had to poop but could hold it. He did have very minor leakage immediately after his takedown. When I say minor I mean slight staining of his underpants. This went away as he started into real food and the output thickened up. Over the last two years he has never mentioned having any issue with leakage....I believe he would have told me if it had happened. It still amazes me that most days the poop is actually formed....much smaller pieces though that pre-UC poop. The pouch really does learn to start to absorb water.

The only meds he takes are imodium every now and then. As a rule he does not use it but if he is going to do something that he knows he does not want to have to go he will take a couple. As example, he went white water rafting....took a couple of imodium and was fine for the duration. There is also a BIG physcological aspect....if he out and busy he can go half the day and not need the bathroom but if he is sitting around doing nothing he can go quite often. One issue Dillon has is that he is not confident that he can tell gas from a poop. Therefore many of his trips to the bathroom are just to expel gas.

I don't want it to seem that this number of trips to the bathroom are a big deal...it is not. And as a girl you will find it even easier. Every time you sit to pee you will just empty your pouch. It is as quick and easy as that.

On a more serious note you should speak with Dr. M about female fertility issues. I believe it is more of an issue with women than men, however I don't know if that is due to the J pouch surgery or the colectomy. Make sure you talk to her about it.

The other issue that is always on our radar is pouchitis. So far Dillon has had no issues and we are aware that most cases are easily dealt with with a course of antibiotics.

Make sure you get all your questions answered. If you are happy with your ileostomy it may be that you want to wait a while and see if you can get the sensitivity issue under control. As best as I understand, you can wait years and years and still proceed to a J pouch if you wish.

Best of luck....I wish you as much success as Dillon has had.CathyMom to Dillon (age 20) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS